jazzoLOG: A Subtle Shift    
 A Subtle Shift24 comments
picture11 May 2005 @ 08:50, by Richard Carlson

Today means boundless and inexhaustible eternity. Periods of months and years and of time in general are ideas of men, who calculate by number; but the true name of eternity is Today.

---Philo

Example moves the world more than doctrine.

---Henry Miller

In Buddhism there is no place to apply effort. Everything in it is normal---
you put on clothes to keep warm and eat food to stop hunger---
that's all.

---Yuan-S'ou

Photo of Ilona and the author on Easter Sunday.

A year and a week ago I underwent major surgery for removal of a prostate gland that had been determined to be a bit cancerous. I wrote about it and talked openly. Cancer is as terrifying to people of our civilization as just about anything we think of. I learned in the waiting rooms, however, that it makes brothers and sisters of us in treatment, as men and women struggle with their own varieties. The silence in those rooms is broken with great relief when we start talking together. I thought writing and letting people know what happens to me might serve some purpose---at least for research because so much effort is going into finding a cure...or even a cause.

But lately I guess I've gotten silent too, and occasionally I'm reminded of that, when a faraway friend or relative writes, "What the heck is going on with your health?" I haven't meant to be secretive, but there are some contributing factors. For one thing, I was raised not to talk about ailments. My parents didn't tell us much about theirs, and when they felt it was time to cash in their chips and go, that's what they did. As a kid, I got the impression that what chiefly marked the elderly was they always were talking about hospitals and stuff being taken out of them...and the long convalescence. LBJ showed us his scar. So despite my resolve to let you know, I may have slipped back into my more natural reserve about some things.

Furthermore, I sense there is a bit of a stigma about getting sick this way. People do NOT want always to ask me how I am...with that sympathetic tone. But if they don't ask me, then they might worry I'll think they don't care. So sometimes I feel they avoid me altogether. Easier. And I may sense their sensitivity and try to help them out by avoiding them too. Then I think maybe I've changed into someone more resentful and bitter...and that's why people don't smile in my direction so much. That's a dangerous downward spiral always available. Perhaps I slip into it sometimes.

And then have come intervening personal matters that really don't have anything to do with cancer...although, once you've got it, as terminal or survivor, everything seems to have to do with it. There was the Presidential Election, and I believe it was the second stolen one in a row. Obviously I went ballistic with my conviction, and wrote about it as long as I could hear so much as a peep of protest in the media or on the Internet. More recently our daughter suffered an injury in gym class that required reconstructive surgery. It's cost Ilona a lot of time from school, her grades have gone down---although in the old days a kid would have been extended extra help and time to catch up---and we have needed to care for her. (Her last visit to the surgeon and physical therapist will be today...so her life is returning to normal.)

But mostly I think I have been experiencing a shifting of my life's gears. Having never had a serious illness before or been in a hospital for anything, I'm new to this kind of dropout. I remember kids used to get something, like rheumatic fever or a touch of polio, and just sort of disappear for a year or two. The rest of us would operate like the herd animals we were, and move on without giving our ailing comrades a second thought. Only a few were curious about the kind of change in life and time the situation requires. Time changes remarkably when you're always waiting for the next test result.

Three months after my operation, very slight prostate cell activity still was located in my bloodstream. We held a vague hope it might be residue from the surgery. Nope, a couple months later it still was there...but it was about the same amount. It was so small that even the latest microscopic technology wouldn't be able to find it. Two more months, however, and there was a bit more going on. Something had been left behind, and we needed to try to eradicate it. Radiation was selected as the therapy. We... Well, since stuff is left up to the patient to decide now (to avoid those lawsuits) I have to say "we." THEY consulted the statistics and told me that most often, when this occurs, the bladder is the next place the cancer goes. More tests and another bone scan ruled out activity elsewhere...so a section of the bladder is where the radiation was aimed.

I got 37 radiation treatments, every weekday. Those treatments concluded a month ago. Mostly I had no side effects. Others report burning and pain, particularly toward the conclusion of the series, as tissues become increasingly sensitive. The amount and location of the radiation remains the same...I think, or at least in my case. Everyone is different, and because of that and the incredible technology and staff required, it is very expensive. It cost more than the surgery. People who work in this kind of radiology have a very special challenge in their career, but I found we really seemed to like each other...and I think that must have helped in my process.

But now, we wait again. I'm going to see my regular doctor next week, just for the couple-times-a-year checkup, but I asked her to write an order for a PSA in the blood test because I want to know what's going on. My radiologist cautions it's too soon for an accurate readout, and he's not seeing me again until October! My urologist and surgeon has ordered a blood test and appointment in July. We're looking for 0% activity 3 or 4 blood tests in a row. If that happens, I'm out of the woods...for now anyway...or for that type...or something.

Uncertainty steps in where always there has been a complacency taken for granted. Well, I'm 65...and most of my life development has been right on schedule---although usually I'm the last to know just what is happening. I suppose that could be a disastrous history, if enough hadn't worked out pretty well and I weren't so content (despite the grousing around that I do) and I didn't find life's progress so wonderfully amusing. So I guess I haven't kept up with writing about the cancer because everything has gotten so gradual...and all we seem to do is wait. When would be a good time for essays about this to conclude? Hmmm, I may have started a series here with only one inevitable ending. At this point, the uncertainty and anxiety are tough, and I admit it. I sincerely hope I'm not too much trouble for other folks to be around. I think that fear may be what really causes age to kick in. Thanks for reading.


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24 comments

11 May 2005 @ 10:08 by Kay @207.69.137.205 : Thanks
Thanks for the update. It is always good to hear from you.  


11 May 2005 @ 12:07 by swan : Richard,
thanks for sharing your personal journey. It is hard to imagine what it is like to be living with and surviving cancer. You are right, it is also hard to be the friend of a cancer survivor and know what to say. You wonder if it is better to say nothing, rather than be a constant reminder. I have missed your writing. Lovely picture of you and Ilona, it have to say you look 10 years younger. I am sorry to hear about her accident too and it is good to hear she is getting back to normal.  


11 May 2005 @ 12:16 by judih : time
there was a time when my heart poured out for my friend with cancer, then it was too much - I could not cope. But, as time crawled on, and she and I got used to her cancer and ongoing treatments, i stopped worrying and crying and it became a part of our daily grapple.

And so, I wish that your daily grapple becomes eased with good news, Richard.
And the best to Ilona and the family.  



11 May 2005 @ 12:21 by jstarrs : Thanks for sharing, pal...
...& best wishes.
ps. Lao Schmoo said "finish egg on plate before posing for picture".  



11 May 2005 @ 12:33 by Joanne @63.235.124.248 : Update
Richard--Thanks for continuing to share your life's adventure. You and your family are in my prayers. Peace. Joanne  


11 May 2005 @ 12:57 by jerryvest : Your experience with prostate cancer is
very helpful to me. I learned that I have prostate cancer as well and will be undergoing an operation in a few weeks. Like you, I have never had treatment in a hospital so all of this is somewhat new; however, I shared with everyone my wife's experience with lung cancer and later, brain surgery. She is doing well so I plan to recover and continue to enjoy life with her and our grandkids.

Hope you continue to do well and am sorry that you had to go through all of these radiation treatments.  



11 May 2005 @ 13:39 by martha : Thanks Jazzy
Appreciate your sharing. You are helping many by leading us through your health issue. Good luck, my thoughts are with you. Mr. Morris says good luck old chum.  


11 May 2005 @ 14:17 by jstarrs : ps - apparently
pumpkin seeds are VERY good for diminishing the inflammation of prostate, cancer?...they also taste yummy when grilled, also.
http://www.cancer.prostate-help.org/capump.htm  



13 May 2005 @ 08:35 by jazzolog : Especially For Jerry
Thanks to all for your comments. There's a special boost in seeing Kay get in here with the first reply, especially given the recent loss she has suffered. I wish she could feel at home with us in here again. Joanne is a faithful friend here in Athens. Judih's perspective in the healing process is very honest and helpful too.

I want to share this email reply with Jerry however, since he is entering his own version of this experience. The message is from Dr. Richard Strax, who is the brother-in-law of a very old friend. Richard is a diagnostic radiologist, and apparently one of the very best. He is prominent in the Radiological Society and on the board of Medical Examiners in Texas, where he also is administrator of the big hospital in Houston. He has been very generous with me over the past year, checking my tests and the credentials of my doctors, and really serving as a Second Opinion. Here is what he wrote:

"I don't pity, sympathize or empathize with you about this illness. I admire
you. Not cause you have an illness that, statistically, all men either have
(and don't know it) or eventually get, but because you are able to express
your insights and inner thoughts so well. And maybe that helps you, too. And
maybe it also helps others (I took the liberty to forward this message to a
few folks - hope you don't mind)."

What is striking to me about what Richard says, Jerry, is the part about "all men." This is an increasingly held view...and one I don't think was common just a year ago. In a way it is comforting to know we are not alone in going through this (and of course a visit to any crowded urology waiting room will bear that observation out) but what in the world does it mean? Is this American men we're talking about...or every guy in the world? If we all get it eventually, why? What IS it?

You may not have time for such ponderings just now, Jerry, but you will. I'm going to ask Richard and others...and do the research, and I'll put it up here if I can. In the meantime, good friend, do reply or email with more personal concerns. I can't tell you how important to me the personal ministrations of friends have been through all this!  



13 May 2005 @ 08:55 by jazzolog : From Another Friend
coincidentally also in Houston~~~

http://www.youarethelightmovie.com/thelight/TheLight.html  



13 May 2005 @ 15:28 by vector8 @62.253.206.95 : Health matters
Hi Richard,

Thank you so much for sharing what's going on with you.

For many years I've been interested in health, looking for the cause and healing. I've looked for solutions to health in the allopathic, complementary, mind/body and spiritual fields. I have studied various healing techniques. One conclusion I've come to is that if you look for a cause, you'll always get one. There will always be a reason for a new disease, giving rise to a new treatment which keeps the medical institution going. I also know the medical institution are doing the best they know how to do.

My view is where there are no causes, there can be no effects.

My way is the way of Love.

I love you Richard. I see you as perfect and whole; and you can be nothing but perfect.

Enocia

{{link:http://vector8.blogspot.com/2004/12/do-food-supplements-and-diets-work_14.html|link}

{link:http://vector8.blogspot.com/2005/05/love-that-wants-nothing-in-return.html|link}

{link:http://vector8.blogspot.com/2005/05/love-without-conditions.html|link}

{link:http://vector8.blogspot.com/2005/05/revisting-causeless-realm.htmllink}  



14 May 2005 @ 12:19 by jerryvest : All men get it
I did inquire about prostate cancer and my urologist said that he thought it was a break in the DNA. A friend of mine who had the surgery a couple of years ago said that his doctor couldn't say what cancer was. Anyway, David, I appreciate that you share your experience with these procedures and how your life is affected by cancer. I have noticed that when my wife tells someone that she had lung cancer, their response is generally, "oh, you were a smoker." It's as though she deserved what she got.

I'm not looking forward to this surgery, but will go through with it. I get a feeling that I am now caught in this medical system that I will never get out of. I've looked at alternatives and they don't look much better.

I am healthy, so I expect to recover and get on with my life.

Much love to all,

Jerry  



15 May 2005 @ 09:33 by jazzolog : More About Prostate Cancer
Responses I've received here, at other sites, and by email have prompted me to write a short essay this morning. One of the emails was from the school nurse in our district who asked that I write something for her health newsletter. Here's what I came up with~~~

The computer and Internet certainly have changed the Carlson family life over the past 5 years. They've changed the way we deal with sickness and health too. When I was diagnosed with prostate cancer on my 64th birthday last year, I quickly Googled the condition and bookmarked a few good sites. It's not that I believe in treating myself rather than staying inside the medical mainstream, but there are a couple of good reasons for hitting the Net.

One is that the days of doctors telling you and your family just what you're going to have to do seem to be over. Maybe it's because of malpractice suits or they know we're going to do our own research, but now you're presented with options and statistics and then you decide. Never mind the physician went to school and training for a dozen years to learn how to do this stuff, overnight you may have to become an expert.

When I met my radiologist several months ago, he tossed so many choices and statistics at me that briefly I was blinded by his science. I said, "Doctor, this is like playing roulette at Las Vegas." He gave me a sort of wicked smile and replied, "Only there's no jackpot." That was my first taste of radiology humor, but I got used to it.

Cancer looms increasingly at the end of life's road for Americans. We still hope for a death from "old age" or a sudden lightning bolt of some kind, but we know personally more and more people who are battling cancer. I decided to be open about my diagnosis and I'm glad I made that choice. Others prefer to be more private, but I have welcomed the support of friends, colleagues, and folks I've met on the Internet...because I wrote about it there too. Not everyone wants to know about things so personal, and I always need to remind myself of that fact.

Skin cancer remains the most common kind of cancer in the United States, but we guys need to know prostate cancer is number 2. One in 6 men get it currently, and the number's increasing. Every year over 232,090 men are diagnosed with prostate cancer, and about 30,350 die. In the UK only 1 in 20 men is diagnosed with prostate cancer. Why is that?

We don't know what causes it, and if your family physician sees a flag on your PSA blood test and sends you to a urologist, neither of them probably is going to try to tell you. Maybe there is something about the American lifestyle that is creating more of it here than in the UK. Or perhaps Brits just don't want to know about it. (Those men also tend to wait and watch more than we do, rather than head right away for surgery, radiation or chemo.)

There are many good websites about prostate cancer, and I recommend ustoo.com and for links to really good research networkforgood.org. I welcome any personal email and you may write to jazzolog@peoplepc.com.  



17 May 2005 @ 00:10 by jerryvest : Ambivalence is my present experience
with the diagnoses of prostate cancer. My dreams vividly show how I feel about being cut open and perhaps poisoned by these radical treatments. The professionals really don't know if their procedures will work or whether they can even get all of the cancer out of our body successfully. They even warn us that we can become inconcinant and impotent. So, isn't it quite natural to doubt their knowledge and skill. I understand that they are doing the best they know how, but with these possible consequences of their work, I wonder if living with these disabilites and handicaps is justifiable. Perhaps, I should wait for science to advance and take my chances with the "watching".

Even though we have to make the decision, I think the medical profession should be more helpful. They could at least be more open and honest with us about our chances of letting the cancer takes it's course. I'm 70 years of age and am enjoying life fully right now--in a few weeks with surgery and possible radiation, I can be someone I don't recognize and appreciate. If I wait, the cancer will spread and I will die of pain and suffering. However, even with the treatments, this aggressive cancer tends to return.

I feel as though I now know what being between a "rock and a hard place" is like--and, don't like it at all.  



17 May 2005 @ 15:19 by jazzolog : In Personal With Jerry
I don't want to go too far in these public comments, so please let me know if this kind of talk should be in private emails. Some sort of incontinence may come to us all I suppose at some point in aging, so I never really worried about it---and have been fortunate not to be thus troubled. One does wake up from the surgery with a catheter, and it stays in for a while. I hated it. I have a friend who suffered some kind of infection complication during recovery from this procedure and has had the catheter for over a year. I'd be ready for suicide if that happened to me...and I'm afraid my friend is sinking fast into that kind of despair. There are germs in hospitals, this surgery is major and recovery is difficult. It is good to have someone around, like a friend or relative, until you can get out. My wife accepted accommodations at the hospital itself, and helped keep me safe. One is on morphine or other heavy sedation in there.

Let's talk about impotence. I learned there are levels. The prostate makes semen, so that level is bye-bye...obviously. Well, semen always had been kinda messy and girls found it icky..and you aren't really going to have a baby with that 16-year-old at the super market who honored you with a little flirtation, are you? That's how I thought about it before surgery. Now I kind of miss it, mess and all. I certainly don't feel less the man, at my age, and I still have wonderful sexual experiences, including climax...but the gush really is a splendid phenomenon. I've always loved when a woman acquires an appreciation.

The 16-year-old still looks good and could give me problems were I not so righteous. But the next level is no erection, and that can put a damper on one's escapades. They say this is caused by careful removal of nerve endings involved with the lymph system so intimately involved with the prostate. There are surgeons who specialize in this part of the procedure, so as not to disturb as few of those precious and carefully-trained nerves as possible. Costly though. And you can retrain the nerves, they say. I was on my way I'm sure, until the radiation option became necessary. I still have hopes and I'm as much of a knave as ever, but the loss of erection really drives a lot of guys to extremes. There are implants and strap-ons and inflatable stuff and all that. Mostly it is a dialogue between you and your partner, and the nature of your mutual enjoyment and affection. Do have that dialogue and consider well.

I know the anxiety, Jerry. It comes with the diagnosis and looks to be something one really has to deal with...maybe for the duration. And I'm sure you have the feeling I do that cancer is a sort of demon that just loves to feed on anxiety. All of your spiritual training and foundation is for right now. Please continue to let us know how you're doing...if you want to.  



17 May 2005 @ 16:12 by jerryvest : Very good information indeed, Richard...
I don't mind having this public discussion related to our surgery and beyond, especially coming from you. Today I am visiting my surgeon to plan for the hospital procedures. I do plan to meet with him again before the surgery as I want him to tell me more about his plans and also the follow up. I did have a very good discussion with him early on and he is very forthright about what I may experience. One of my other friends also detested the catheter and said that he had to have it in for an extra week as his surgeon was on vacation. (Hope he enjoyed himself while my friend suffered such discomfort.)

I will continue to share my experience and only hope that I can be as upbeat and optimistic as you. Like you, I do count much on my spiritual practice to keep me close to my true self and creator. My wife is such a positive force in my life and we have shared the "good, bad and ugly" together with this cancer thing.

I do look forward to our continued discussion and I gain much strength and courage from your interaction with me.  



18 May 2005 @ 09:46 by jazzolog : Jerry In Our Prayers
I hope the talk with the surgeon went well, and that Jerry lets us know. There were a couple of things I woke up with after the procedure about which I hadn't been told. One was the sore throat I had from something stuck down there so I wouldn't clog up I guess. Another was a second incision, beside the main one, for a great pile of drainage tubing that got pulled out a couple weeks later along with the catheter. I don't know, maybe I was told and just forgot: another good reason to have someone along with you every major step of the way.

I've let Dr. Strax know this dialogue is going on and invited him to join in if he wishes. He's a very busy guy though.

 



18 May 2005 @ 16:07 by jerryvest : MRI
Richard, my family doctor recommended that I ask the surgeon to order a pelvic MRI so that I know the extent of the cancer. I did have the biopsy and the surgeon said that it wasn't necessary to have the MRI. I have a call in to my family doc to see what he suggests since I've known him for over 20 years and trust his recommendations.

My question to you is, how important is the MRI and did you have one before your surgery? I'm thinking that if the MRI shows the cancer beyond the borders of the prostate then I may want to choose the radiation rather than the surgery since I would have to have it either way.

Thanks for continuing this discussion.

Anyway, I have an appointment with my surgeon the day before my scheduled surgery. He will be on vacation so I can't see him earlier. Any thoughts on this concern?  



18 May 2005 @ 19:39 by jazzolog : Magnetic Resonance Imaging
If your insurance covers it, have it. For one thing, guys like you and me deserve a tour of the latest medical technology. The stuff really is amazing! And maybe the medical technology can learn a thing or 2 about a couple tough birds they haven't been able to capture until now. :-)  


18 May 2005 @ 22:24 by jerryvest : Thanks
After I wrote the message, I contacted my family doc and he ordered the MRI. He originally suggested it so he appreciated that I was following along. I think my insurance covers it, but will do it anyway.

Thanks  



27 May 2005 @ 16:34 by jerryvest : More tests
Hi Jazz...this has been a week of tests. My MRI did show a small leasion in my prostate and today I am taking a bone scan and Cat Scan. My family doc thought that I ought to have all of the tests so that I can make an informed decision. We are going to the beach in Venice, CA this next week for some relaxation and fun before my surgery on June 14. I do have a couple of workshops with our soldiers at Ft Bliss before this major event so these are good therapy for me.

Anyway, I'll keep this log posted as I go along. Perhaps others will find our experiences helpful. My spirits are good and have much love and support from friends and family. Hope you are doing well.

***************************
Hospital systems don't always work the way we wish. Yesterday, I went to the hospital for surgery and was preped and ready to go. However, it seems the surgeon was bumped from his scheduled surgery with me and we had to pospone it for another day, June 23. It was a reprieve for me as I was ready to go, I now have another week to play some golf and enjoy the benefits of having my sexual system intact.

I also had a very good discussion with my doctor as he felt very badly about this glitch in the system and apologized several times. I mentioned that I'm glad that he was candid with me and did not try to operate when he was feeling badly about the whole thing. His assistant was unable to join him in the operation because of the time changes and he chose to wait till he had his team together as well.

More later.  



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